Supporting families during pediatric critical illness: Opportunities identified in a multicenter, qualitative study

Abstract

Critical illness resulting in a pediatric intensive care unit (PICU) admission is a profoundly stressful experience for a child and their family. Increasing evidence for emotional and behavioral sequelae post-PICU emphasizes a need to provide better support for families throughout this period of care and recovery. The aim of this qualitative investigation was to identify salient and modifiable aspects of a critical care experience that can be addressed to better support families of critically ill children. Individual semi-structured interviews were conducted with 26 caregivers of children who survived a PICU admission. Interviews were audio-recorded and transcribed verbatim; themes were identified via thematic analysis. Caregivers were enrolled using convenience sampling from seven tertiary care PICUs in the Eunice Kennedy Shriver National Institute of Child Health and Human Development Collaborative Pediatric Critical Care Research Network. Themes from caregiver interviews were identified within two overarching categories containing three themes each. Advice for future PICU families: (1) Be intentional about caring for your own well-being, (2) speak up, ask questions, and challenge decisions you’re not comfortable with, and (3) continue to engage with your child. Characteristics of a satisfactory PICU experience: (1) A caregiver–provider relationship of mutual trust established through clear communication and respectful collaboration, (2) hospital environments that provide physical and social supports to maintain humanity in healthcare, and (3) preparing families for care transitions. Targeted, interdisciplinary approaches to partner with families during critical care may improve their PICU experience and contribute to improved long-term outcomes for PICU survivors.

“I want to be there. I have to be there.”: Parents’ perceived barriers and facilitators to bedside presence in the pediatric intensive care unit

“…Optimally supported presence has the potential to mitigate some of the PICS-p morbidities. Our thematic findings compliment those from Jarvis's study to identify ways of optimally supporting families of critically ill children in PICU ( 33 ), but include additional details about factors influencing presence.…”

“…The importance of self-care activities as a form of coping was a transversal theme. A recent qualitative study by Jarvis and colleagues explored ways of supporting family members in the PICU and noted that family members should be intentional about performing self-care activities ( 33 ). Although self-care activities may remove parents from the bedside, they enable active and engaged presence.…”

Healthcare Burden and Resource Utilization After Pediatric Acute Respiratory Distress Syndrome: A Secondary Analysis of the Collaborative Pediatric Critical Care Research Network Acute Respiratory Distress Syndrome Study

“…Improved care coordination support at discharge may improve caregiving burden resulting in improved postdischarge satisfaction in families (6, 29, 30). PICU follow-up clinics have the opportunity to identify and address new or ongoing psychosocial challenges families face (31).…”

“…urvivors of pediatric acute respiratory distress syndrome (PARDS) are often discharged with new resource needs which may increase healthcare utilization and burden of care required by families at home (1)(2)(3)(4)(5). Increased healthcare needs and home healthcare burden can contribute to declines in quality of life as well as poor family caregiver outcomes (6)(7)(8). However, the burden of healthcare at home and child healthcare utilization have not been well described by survivors of PARDS.…”